DSN Goes to Rare Disease Day at NIH

January 18, 2019

 With Rare Disease Week coming up from February 24th-28th, we thought it would be fun to reminisce on DSN's part in last years event.  For those of you joining us since last year, it was an amazing experience we are looking forward to replicating and building on again this year.

 

 

 

 

 

 

This year’s slogan for Rare Disease Day 2018 at The National Institute of Health was “Patients are not only subjects but also proactive actors in research”.  Being there with Dysautonomia Support Network sure felt like we are living, breathing and displaying that slogan with everyone we came in contact with.
 

I have never been to a Rare Disease Day event at National Institute of Health and I was so excited to go.  I know there are a lot of you who can relate to this, I am a medical/advocacy/awareness nerd. So, this opportunity was like me telling my son he could go to Willy Wonka’s chocolate factory.  DSN President, Amanda Aikulola and board member, Cathy Murdick also attended the event to share information about the rare forms of dysautonomia and how DSN assists patients in living their best life with chronic illness.

 

Dysautonomia Support Network is not your typical support group and I recognized that very soon after joining. I also  realized very quickly that I wanted to be a part of what they were doing in the world. I desired to be a part of the solution and I wanted to stop living in the problem.  After I got sick, my whole world stopped. Everything changed and as much as I wanted it to be normal again, I knew it never was going to be. When DSN found me or I found them, depends on how you look at it, I was feeling very alone and without purpose. Today, things are very different and attending Rare Disease Day at NIH was all part of the amazing things I get to do at DSN.

 

Cathy Murdick and I manning our table 

 

Upon arriving, we are put through a very thorough search and entrance protocol.  Then we got lost for a few minutes driving around trying to find the building we were looking for.  The campus is large and full of students, patients, doctors and researchers that come there everyday to study all sorts of illnesses.  Once we got checked in and found our table, I was starting to feel the buzz of energy that events like this produce. Everyone there is passionate about what they do and who they advocate for.  This fact alone creates a sense of beauty, even when you are discussing some really unfortunate illnesses.
 

This year, DSN decided to put focus on some of the rarer forms of dysautonomia and we had prepared information packets the night before that explained them.  We also included in that packet, who Dysautonomia Support Network is and what we do, which is empower patients. We also made some great connections and friendships as we talked with the other organizations there about what they do.  These events are not only talking about your organization but also listening as well. I know I learned a lot that day about many illnesses that affect less than 200,000 people.
 

Amanda, Cathy and I each have different strengths and together we made a pretty great team.  Amanda has vision and professionalism that drives what she does. Cathy is organized and easy to talk with, which was great for talking with all the patients that day.  I have creativity and passion that gives way to my energy. We were like the triangle of advocacy, awareness and patient empowerment. The best part of it all is…..we are all patients.  I feel like we should have been wearing capes. At least that is how I envision it in my mind.

        Amanda Aikulola, DSN President 

 

 

We gave out so many packets, cards, calendars and information that day.  We provided hope for some patients that they could get involved, as well.  We talked with doctors and researchers about what we need as an organization. It was a huge opportunity as an organization but also for each of us as individuals.  I was honored and humbled to be there.
As the day came to a close, my mind was thinking about NEXT YEAR and all the amazing things we could do as an organization. Thinking about all the lives that will be changed, just as mine was, all because one woman refused to let her illness win.
 

You can volunteer with DSN and make a difference in the patient empowerment movement, we are always looking for volunteers to share their talents with us.  If you think being involved is something you would like to do Click Here for more information or Here to Apply. We look forward to hearing from you!

 

 

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